Thursday, February 17, 2011

Phase One Complete

It’s official: Daphne has been discharged from the hospital, and we’ve moved into a hotel, where we’ll spend the duration of our time in Birmingham.

Getting to this point hasn’t been easy. From a medical standpoint, Daphne has done remarkably well, experiencing a swift and uneventful recovery. But the logistics of getting her out of the hospital and home to Utah have been complicated and time consuming to arrange.

First, we had to make arrangements for follow-up care. When Daphne gets home, she’ll need a pediatrician and a cardiologist. Since UAB wanted to fax Daphne’s medical records to her Utah doctors, I contacted our pediatrician to have her added as a patient, and the medical team focused on finding her a cardiologist. Initially, they scheduled an appointment with one doctor, but then Daphne’s Alabama cardiologist, Dr. Carlo, made a special request to a former colleague with a closed practice and asked her to accept one more patient. Scheduling an appointment was a joke, since Daphne needs to get in as soon as possible but we have no idea when we’ll be home. Try explaining that over the phone without driving the receptionist crazy!

Next, we had to arrange for Daphne to have portable oxygen for the flight home. This was a two-part project. First, the nurse practitioner had to prepare a letter for the airline, explaining the need for the oxygen and describing the equipment. When I schedule my flight, I’ll have to let the airline know that I’ll be traveling with oxygen, and I’ll have to arrive extra early so that they can examine the equipment.

Second, we had to convince a medical supply company here in Birmingham to let me take very expensive equipment across state lines. This was by far the most challenging obstacle to Daphne’s release. It took our Alabama social worker, Suzanne, two weeks to make the arrangements. As you can imagine, no company was anxious to accept the risk of working with an out-of-state stranger or providing for a pediatric patient outside its area. Once Suzanne found a medical supply company willing to accommodate our strange situation, it took countless, lengthy phone conversations to resolve their lingering reservations. At first, the company was confused about whether the oxygen was necessary; then they were concerned about getting the equipment back. They were compassionate people who wanted to help, but they also needed to limit the company’s risk. Ultimately, I had to pay a rental fee, agree to ship the equipment back, and sign a promissory note agreeing to pay for the equipment if I didn’t return it. Once everyone agreed to these terms, we began preparing to leave the hospital.

We had hoped to be discharged early Wednesday morning, but we had to wait for Daphne’s portable oxygen to be delivered. At 4:30 p.m., a representative from the medical supply company arrived, pushing a cart weighed down with two different oxygen tanks, two chargers, an extra battery pack, a humidifier, extra tubing, and a pulse oximeter. There was so much stuff! I was caught completely off guard. Suddenly, I realized that leaving the hospital wouldn’t make Daphne any more portable. She had been shedding IVs and monitors since surgery, giving me time to imagine life without tethers. So even though I knew she would be leaving the hospital on oxygen, I didn’t think about how bulky and breakable the equipment would be. When the oxygen representative arrived, I caught a glimpse of my new life with two girls, and I realized, for the first time, that even moving from one room to another would be challenging. I shouldn’t have been surprised by this vision, but I was.

After the oxygen orientation, it was time to pack up and leave. I thought I would feel elated when this moment arrived, but in the final minutes, I found myself fighting back tears. I wasn’t sad to be leaving friends behind—I had said my goodbyes—but I did feel alone. For the last two and a half weeks, Daphne and I had been cared for by an incredible team of doctors, nurse practitioners, nurses, and social workers. These people had been Daphne’s advocates and my teachers. But that night, for the first time since arriving at UAB, I felt like Daphne and I were being cared for by strangers who weren’t personally invested in our journey. They were still kind and competent, but we didn’t share that deeper bond that comes from fighting the same battle.

After a few moments, the sadness passed, and I was ready to leave. In Alabama, you can leave the hospital in one of two ways: (1) holding the baby while sitting in a wheelchair or (2) rolling the baby out in her crib. Since I didn’t give birth to Daphne, it didn’t seem appropriate for me to sit in a wheelchair. So we buckled her into her car seat and put the car seat in the crib (I wanted to make sure she would fit and the oxygen tube wouldn’t get tangled). My mom went to get the car, while Daphne and I were escorted to the loading zone.

Now that we’re settled in our hotel, I feel more at ease. Although the hospital staff did a fantastic job of including me in Daphne’s recovery, allowing me to care for her with relatively little supervision, it is still relieving to be on my own (well, with my mom), away from the watchful eyes of so many helpful nurses. I no longer have to report every dirty diaper or wait for someone else to deliver Daphne’s next meal. I finally feel like a full-time mom.

Our first night in the hotel went pretty well. Daphne’s pulse oximeter keeps track of her heart rate and oxygen levels, but it doesn’t have an alarm, so we have to keep a close eye on the numbers to make sure she stays in range. I dozed with the pulse oximeter in view so that I could check Daphne’s stats throughout the night. She slept fairly well, although she was a little restless from about 1:00 to 3:30 a.m. She’s not much of a crier (unless she’s being poked with a thermometer), but she does grunt and wiggle when she’s uncomfortable.

What’s next? Well, now we wait some more. Since we can’t take Daphne out in public, we’ll be hanging out in our hotel room until we receive word that the legal paperwork has cleared. Then we’ll hop on the first flight to Utah and pray the snow doesn’t prevent us from getting home.

Congratulations on your sweet little girl and her successful surgery. Here is hoping you get home soon!

I live in Utah and am a "heart mom" meaning my son was also born with a heart defect (transposition of the great arteries). He has his open heart surgery at Primary Children's when he was 5 days old. He is now almost 4 years old!

I wanted to make sure you were aware of a local heart family support organization called Intermountain Healing Hearts: www.ihhearts.orgThey hold many family activities and you can connect with others who are dealing with the same heart issues.

Daphne Jane Gainer

A Brief, Beautiful Life

Daphne Jane Gainer was born on January 20, 2011, in Birmingham, Alabama. She was adopted one week later by Will and Rachel Gainer, residents of Salt Lake City, Utah.

Hours after birth, Daphne was diagnosed with a congenital heart defect (CHD) known as pulmonary atresia, which prevents blood from returning to the lungs to receive fresh oxygen and results in a severely underdeveloped right ventricle.

Living with just half a heart, Daphne spent all but three days of her life either in the hospital or on supplemental oxygen. She endured three extended hospital stays, two heart surgeries, one heart catheterization, and countless needle pricks, blood draws, and other tests.

Daphne passed away on March 18, 2011, just hours after undergoing her second heart surgery. Her life on earth lasted just 58 days, but it was both miraculous and inspiring.

This blog is maintained by Daphne's mother, Rachel Gainer. It celebrates Daphne's life, explores the realities of grief, and affirms that death is not the end and families can be together forever.